I have albinism—AmA

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It's in the thousands, but I don't remember the exact numbers.

Question is, would they fetch more in the African black voodoo market or the worldwide organ transplant black market?

Just wanna throw this out there, how much do you want for your left kidney?

Why does it have to be the left kidney?

For perfect sacrifices duh

Scoffs This moron doesn't know the right kidney is the one with the magical powers. Snickers Check this shit out.

Okay Mr. Thedude, I have considered your proposal and I am willing to sell said item for $420,420. American. In cash.

How about 420 pounds of lsd? It's about 10 mg per hit so you'll be set for a couple years

If you somehow managed to acquire 420 pounds of LSD, I am happy to proceed with that exchange.

This thread is getting, ironically, darker and darker

You're telling me every AmA doesn't involve an organ and drug exchange?

Does it really interfere with daily life?

Yes, mainly the visual impairment and inability to spend long periods of time in direct sunlight. Both have remedies, but it's not like I could go about my day without a monocular or sunscreen.

Woah that's why milky in Me Myself and Irene has that little telescope thing!

Believe it or not, it's a total chick magnet.

Is a hot dog a sandwich?

Yes, because it's a smaller submarine sandwich.

Oh my god

r/woahdude?

Is a taco a sandwich?

No, it doesn't have bread.

Soup in a bread bowl?

Bread bowls exist?

Yes, and it's awesome

How do you stop it from getting soggy and falling apart?

Does albinism usually come with poor eyesight or just some forms? Any other side effects?

OA and all types of OCA involve some degree of visual impairment, though the range varies and isn't correlated to OCA type IIRC.

People with albinism tend to sunburn easily if they spend too much time in sunlight (we can't tan) but those are the only primary effects.

Hey, I'm a ridiculously pale redhead, does this guarantee if I'm not a carrier of the mutated gene, that my weird double recessive mutated red hair gene thing gets definitely passed on? Step 1: populate the word with gingers. Step 2: ????? Step 3: Profit. Either way we would only go out at night or buy shares in sunblock companies.

What about vitamin D??

I actually am vitD deficient. Legit level is 7. I seem to be trucking along. Besides. World sunblock domination could be a thing really soon! Maybe. And you're cute. It's settled.

I guess it's settled then.

Is it totally wrong that I pictured the Billy Idol song "White Wedding" playing dramatically and can you please do that in real life someday?

We should definitely totally do that someday.

What's your actual race or ethnicity? Does you having albinism affect how others from that same group view you, or does it change how you personally identify yourself?

I'm Hispanic. Funny that you ask, I had an exam this morning and one of the students I was studying with was from Mexico. He took a phone call and spoke in Spanish, and so I asked him where he was from. That's when he expressed his shock that I spoke Spanish, telling me he didn't think I would.

No one, Hispanic or not, would ever think I speak Spanish. And if I only introduce myself as Alex, no one would likely guess I was Hispanic. Most everyone is taken aback. Not to say they treat me differently before or after knowing—though there was one incident where a Hispanic group was much more comfortable with me once I spoke Spanish. In general... it's not like I'm less accepted by either group.

Personally speaking I identify as Hispanic. I love the language, I love the food, the culture. I love visiting Mexico. But I also enjoy living incognito and having everyone think I'm white. It's like the best of both worlds.

I should mention, I speak perfect, unaccented English. There's zero way you could tell I was Hispanic without knowing my name.

Right on, I'm hispanic but I look pretty white, so other hispanic people don't view me immediately as hispanic. It's just like you said once they know my last name, they're accepting.

It's always fun to blow their minds :P

Do you wear contacts or do some people with albinism not have red or pink eyes?

No one with albinism has red eyes, that's a myth. Most people with albinism have blue eyes.

Wow! TIL. Does it annoy you when people think that?

Not really, I prefer they bring it up so I can let them know it's a misconception. It's not unfounded, most animals with albinism have red eyes—very clearly so, just look at this albino owl. However, humans with albinism have blue eyes.

Thank you for your reply :)

Thanks for asking :)

I know someone with albinism who actually has lavender irises...it's so neat

The range of violet irides are so freaking cool. While most people with albinism have blue eyes, you can get different colours if you have more pigment in your irides. My eyes are hazel, for example.

He's an Asian dude, that's super cool though! Thanks

Tell him I said hi :)

Decreased pigment in the iris (the part of the eye with color) and the retina leads to a diminished ability to absorb light. As light reflects off normal blood vessels in the back of the eye and through the pale iris, the effect is the red color sometimes seen in people with albinism. www.visionfortomorrow.org/albinism-faqs/

Sometimes, under specific lighting conditions. Take a flash photo of your eyes in the dark and they'll also be red.

Yeah I was just explaining where the red eye thing comes from.

Also helpful for the people who are like "My friend is albino and he has red eyes!"

The only person I ever met with albinism was a computer coding genius due to staying indoors so much and teaching himself to keep busy, have you developed any skills through having to spend more time indoors occupying yourself than the average person?

Well not to brag but I do know a lot of stuff. Not enough to like clean house at Jeopardy or Trivial Pursuit, but most of my middle school and high school years were spent indoors on a computer. And besides... the usual stuff teenagers look at on computers... it was a lot of learning. Lots of random Wikipedia articles, YouTube documentaries, TV shows, news articles, etc.

If only I had known about Reddit back then...

In your other comments you talked about visual impairment and carrying monoculars. Could you elaborate on what your vision is like and how monoculars help? Is it similar to everyone with the same type of albinism?

It's kinda hard to explain. Usually vision is expressed in numbers, and so using Snellen numbers my visual acuity is 20/400 uncorrected. Meaning that an object that is 400 feet away—someone with perfect (20/20) vision could see it from 400 feet away—I would have to be 20 feet away to see the exact same thing.

That's not to say that I can't see the object at all, I just wouldn't see it in as much detail. Think of the pedestrian crosswalk symbol, the white person or orange hand. I can't see that from across a six lane road during the day, just not at all. I can't usually read people's name tags even if I'm standing right in front of them, or make out the colours of their eyes.

A monocular is like a pair of binoculars but only one scope (hence monocular), some people call it a telescope. With my most powerful monocular, I can get up to 20/20 vision. It's pretty remarkable how much I'm missing out. With that said, that particular monocular is very large and kinda heavy.

Most people with albinism have a visual impairment, though the severity varies. There have been medically documented cases of patients with albinism who have 20/20 vision, and I've heard of some who have 20/800 vision. It varies.

This video more thoroughly explains what I'm trying to get at, and has excellent visual renderings demonstrating different visual acuities. It's designed for people who don't have albinism. However, it's very long, and ain't nobody got time for that! But if you do, I highly suggest watching it.

Can you get corrective surgery?

Surgery really wouldn't do much. Nystagmus correction surgery may improve me to something like 20/300 or so. And LASIK would help correct some astigmatism, but neither procedure could get me to 20/20.

Eye transplants probably could, but they're not possible yet :(

Dude, how many ama's do you do?

As many as I can!

Do you work at night and sleep during the day?

I wish, but I have classes during the day. I'm definitely a night owl, though.

what are you studying?

Psychology.

What is the worst thing about having albinism?

Definitely the visual impairment. I'm not going to say a lot of people take their vision for granted, but it really sucks just not being able to see the same things everyone else sees. Even with a ton of different adaptive equipment, there are just some things I'll never be able to experience as fully as everyone else.

Any history of it in your family?

I have a cousin in Mexico who has it (mother's side) and it's very widely believed my great grandfather had albinism (described as having light skin, blonde hair and blue eyes, though we don't have pictures) but that's it.

Has the frameshift mutation affected anything else, as far as you may know? I know you weren't tested for other diseases, but do you have any suspicions about anything else?

I doubt it, just caused OCA 4. Though I'm curious as to what other disorders I may be a carrier for. We'll all carriers for a variety of genetic disorders, it's just that the odds of meeting another carrier are slim to none.

You should think about taking a genome sequencing test like 23andme and using Prometheus on the raw data!

Generally, a frameshift mutation can lead to other mutations, so it can be helpful to look into for anything else that you may be a carrier for or if you are affected by something that has yet to manifest itself.

I'm a huge genetics nerd, so I love hearing about people's stories. Thank you for sharing yours!

My brother did 23andme, so I have our ethnic breakdown but obviously his DNA is his.

Does it matter if you do AncestryDNA or 23andme? I've been told 23andme is preferable because it gives you the raw data.

I've only seen the details of 23andme, but I have heard that you can obtain raw data to run through other softwares.

I really would not know about AncestryDNA sadly.

One of my friends has OCA 1B and is very much into genetics. It's amazing listening to her spout off different genes and things. She also recommended 23andme because of the ability to download your raw data.

We were considering having 23andme done for our parents and grandmother. They're pricey tests, but if we do I'll bundle mine in there—I believe they offer discounts if you buy more than one kit.

So whats it like to be albanian?

It sucks, we don't get any of the cool American TV shows like Jersey Shore.

Have you noticed that girls treat you differently?

That's a good question. They certainly don't distract me, most treat me the same way I imagine they'd treat someone else. However, I figure I'm pretty low on their physical attraction scoring system.

Have you ever had to call upon the albino code?

What albino code? I don't know what you're talking about!

Looks around shiftily

Spanikopta!

But who was the better albino sidekick Pete White or Pi Wai?

Pete White, for many reasons.

What exactly is wrong with your eyes, why doesn't glasses remedy it? (i know i've had 2 cornea transplants). Also do you drink smoke and do drugs?

There's a lot, and they have complicated names like foveal hypoplasia and iris transillumination. Essentially, a lack of pigment in the eyes during development really messes stuff up. The damage even extends to the optic nerves.

Glasses are great if you have myopia, hyperopia, and/astigmatism. They help me, but they don't get me up to 20/20. Think of it like a camera, you have your lens and you have your receiver or sensor in the back to receive and code the image. Glasses are a lens, and they're fine if your receiver is normal and functional, mine is broken :P

Drugs are bad, m'kay?

o well, that sucks yeah nah i get it vision is seriously under-rated, i was legally blind by 18, so i get how important it is to read social cues and how frustrating it can be at times. I'm curious to how 'normal' your life is. Are you studying at university atm?

It's actually for the most part normal. I mean I look different and have to get close to things and such, but for the most part I feel normal and behave as if I were normal. I don't use a cane or bathe in sunscreen or have a guide dog or anything really outwardly abnormal.

I am, undergrad. The only accommodations I receive are digital copies of required textbooks (though the office in charge of that sucks ass and hasn't gotten them to me this semester). And testing accommodations for some exams, though not all. For the most part I do everything like every other student, which can be challenging at times.

So are you basically a shiny human?

Basically.

Do they have shiny Pokemon in Pokemon Go?

Not yet, but I'm sure it will come with time

What is your favourite Pokemon?

I've always loved Lugia. Not because it's a legendary, it just seems so elegant in both gameplay and videos.

Who was the first Pokemon?

Hello! You have a great smile 😊 thank you for having this AMA.

Do you have many friends who are also albino? Do you have any albino pets?

Thank you :)

I've met many people with albinism but there aren't many who I keep in touch with frequently, usually we just see each other at conferences.

No :( But I've always wanted an albino pet.

The best pets find you 😊 best of luck!

I can't have pets, per my lease contract :( But back home I do have a white german shepherd, and a white cat :P

Awesome! My grandma had a white cat when I was growing up 😊 she was my favorite!

We have 2 great Danes currently in our tiny 3rd floor apartment! When we move into a house I want to do special needs rescue for senior Danes and Danes with vision and hearing impairment! I just couldn't do that to our downstairs neighbors right now haha

Where do you plan to find these dogs?

I had two pet rats in college (apartment not dorm), psych major, one was dark brown/black and one albino. Boo Ratley (To Kill a Mockingbird) and I named the other one Loki. Just because it sounded badass for an albino rat. They were smart and snuggly little jerks. :'(

What happened to them?

Boo Ratley was having very upsetting labored breathing and no vets would look at a pet rat and laughed at me. He thankfully passed quickly but I was even willing to shell out money for putting a rat to sleep (surely that is possible jerks!!). Loki was sad for awhile and didn't feel like doing rat things, then he went on to live the rest of his little rat life. He used to sleep in the hood of my hoodie whether it was up or down and it was adorable. You could feel him sleepy breathing against your neck. If you train them they're super smart.

no vets would look at a pet rat and laughed at me

What the actual fuck? Like, seriously!

Sorry for your loss but I'm sure they led great lives and were fun pets. My cousin had hamsters back when I was a kid and I always loved them. How they'd crawl all over you and run around in their little balls. Watching them drink water was the cutest thing ever. If only they weren't so messy!

You again eh? How have you been?

Yes, me again. Though I don't remember much from our last interaction. I've been good, how have you been?

I don't think we've ever had any interaction but I've seen your AMAs. Just saying hello I guess.

Edit: and I'm good too

Ah, some people tend to be recurring in my AmAs and ask more personal stuff or just check in—I'm usually really good about remembering the usernames when I see them.

But thanks for checking in, glad to hear you've been well!

My 3 year old son as OCA 1. He's awesome. Anything your parents did/didn't do (relating to your vision/skin needs) growing up that annoyed you? We try to buy him cool hats and sunglasses, and always keep some sunscreen with us. But for the most part he does really well for himself!

While I don't remember much from my own childhood, I would say just keep doing what you're doing. Make sure things like sunscreen and hats become a habit. I would see an ophthalmologist if you haven't already. There's evidence that wearing glasses while vision is still developing is beneficial in the long run.

The National Organization for Albinism and Hypopigmentation (NOAH) has books and webinars for parents.

Cool thanks man. We actually went to the NOAH conference this year in Pittsburgh! He's just recently been fitted with some legit glasses as well, he seems to be cool with wearing them so hopefully they are helping him.

Glad you guys went! I couldn't make it to Pittsburgh but I did go to San Diego and St. Louis. Looking forward to Kansas City, those two years will fly!

Can people with albinism dye their hair? Does it work out similarly to a non albino persons hair? Would you feel uncomfortable about it as though you're "hiding" your albinism by doing so?

Yes, we can dye our hair. I've heard different responses on whether or not it'll actually stick. Some say it washes out after two weeks, others that it slowly fades over time, and others that it's completely permanent and only cutting off the hair would remove it. Two or three AmAs ago we had a bunch of hairstylists vouch for the ability of our hair to hold dye despite the lack of pigment. Though the jury is still out on just how long it lasts.

I've personally never dyed my hair. I'm not against the idea and I've always wanted to, just can't pick a colour. I wouldn't do it regularly because I have no desire to change my appearance and the maintenance would be annoying. Though dying of hair is definitely one avenue to try to normalize yourself, some people do it religiously.

Is sunburn damage more of an issue for you compared to non-albino people? If so, what level of sun screen protection do you prefer?

Yes, as there is no tanning. There are no defense mechanisms, enough time in sunlight is a guaranteed sunburn.

I prefer SPF 100 just because it makes for a fun conversation and is a funny joke, but in reality ~97% of the population (including people with albinism) would do just fine with SPF 30.

Are you dressing up for Halloween? What are you going as?

I'm going as myself, that's scary enough.

"I'm dressed as my ghost but if I wasn't albino"

I could easily become the Joker, just need green hair.

What do you think of albinos participating in the Paralympics from blindness rather than in the Olympics?

The visual impairment can be severe enough to be considered a disability (by many metrics, including legally). I think it's the best way to do it. They even have entire sports for people who are blind/visually impaired, like goalball.

What's your favorite food?

Bacon cheeseburger (from Five Guys).

What is the most common misconception you come across that people have about albinism?

Though I don't see it much anymore, there are likely still many people who think people with albinism have red eyes. I've actually had someone tell me I didn't really have albinism because I don't have red eyes.

This is specific to certain parts of Africa, but in countries like Tanzania it is widely believed that the body parts of people with albinism have magical powers. No, that doesn't mean people with albinism drown in pussy. That usually means that people with albinism are killed and their limbs are cut off. Those limbs are taken to witch doctors who proceed to make potions that they promise will make people rich.

I wish I was making this shit up, but it's a very real and very lethal misconception. Not one I've ever encountered in the States, but it should be mentioned.

Who's your favorite albino character from fiction?

I don't really have one, but I guess I'll pick that guy from The Da Vinci Code.

Good choice, Silas was a motherfucking beast

I wonder what his favourite food was.

Silas is the same guy who was Vision in Avengers right?

Probably.

Do people treat you differently when you're in public?

Not in a disrespectful or ignorant manner. I'm sure plenty of them stare, but no one treats me differently.

can you feel your powers grow near snow bioms?do you like to run around naked and scare people when its foggy?is this racist(hope not)?

It doesn't snow where I live, so sadly those powers remain dormant.

Foggy conditions usually correlate with cold temperatures, which are not good for human genitalia.

Not at all :)

What are the most difficult aspects for you personally in having this condition?

Are there any positives; if so, what are they?

For me, it's the visual impairment. Just bottom line not being able to see what everyone else sees. That is mostly remedied today, but the solutions involve carrying out monoculars and even then they don't solve everything. Not being able to pick up social cues, not being able to see 3D effects, etc.

There are no positives physiologically like super hearing or anything like that, but psychologically... I mean this is speaking more towards my attitude of it, but I'm super unique. I've gotten to travel around for conferences and participate in clinical research. Do AmAs and write for a magazine... things I would have never done if I didn't have albinism.

So, you have super white privilege?

I guess so.

I'm only joking man, keep on being you!

What is Reddit's opinion on white privilege?

When is your birthday?

28 April.

Have you seen Me, myself, and Irene???

I have not, but I've heard good things about it.

Do you prefer being around people with pale complexions? Serious question...it makes sense to me

I don't really have a preference, I get along with everyone.

Do people look at you funny?

I'm sure people stare, but I'm too blind to notice.

Is there any health risk involved, apart from the sunburn from staying on the sun? Like, will you live a shorter life, or will your inability to be on the sun lead to some skin issues? Thanks!

There's none that we know of, certainly not a shorter lifespan. Too much sun exposure could lead to skin cancer but too little can lead to vitamin D deficiency.

Ok thanks a lot for answering !

Thanks for asking :)

Do you like Yellowman? He is one of my favorite toasters.

I haven't listened to his stuff but I've heard a lot about him through these AmAs.

He is a very interesting guy. In Jamaica, albinism was very stigmatized. He turned it all around by turning himself into a sex symbol with his talent on the mic.

I wish I could be a sex-symbol and great singer :(

Any luck with the laidies?

I wish.

So um what is your dick size? i'm thinking maybe 7 inches or 6. I don't know about y'all but i'm gonna get me some sexy albino d.....

Not big enough to brag about.

Biologically, what type of albinism do you have?

Oculocutaneous albinism, type 4.

Would you prefer to not have your albinism, or have you come to accept it? If you accept it how did you come to accept it?

Excellent question. As this point in time I'm perfectly happy with having albinism and wouldn't change it even if I could. Though of course it wasn't always that way.

As for when I finally came to accept it? Beginning of high school maybe? Throughout high school I just felt normal and I mean everyone accepted me. Albinism was never something I really talked about, with anyone—though it's not like they asked. I was just me, I guess. It wasn't until my first NOAH conference after high school that I really began embracing albinism. Participating in research, writing on it, doing AmAs. I'm definitely a lot more comfortable with it now than I was before.

You so pale?

Chyeeeaah!

I grew up with an albino African-American friend, and later met up with him in the Furry fandom. He found a LOT of freedom by donning a full body animal costume, and enjoyed being anonymous inside a walking carpet but able to just be the character.

Have you had any similar experiences?

Not as a furry, but I'm Hispanic and it's amazing living incognito and just having everyone think I'm white.

Does anyone neg you for your white privilege?

Only on Reddit.

Pancakes or waffles?

Pancakes!

Does it ever bother you if people ask you about being albino when you're out in public?

Never, though it also never happens.

Would you rather people approach you and ask you questions instead of just staring?

Absolutely.

Do the carpets match the pubes?

I don't have carpet in my home!

I'm really pale and have really white hair but I'm not albino. Throughout high school I've been called albino, some jokingly but some actually think I have it. What should I say? What makes me not an albino if I have the similar skin tone and white/blond hair?

You probably don't have a visual impairment, which is the biggest indicator, but you have a point that it can be hard to differentiate.

We think albinism is underdiagnosed in Nordic countries just because everyone has blonde hair and blue eyes. Visual impairment is a solid marker for albinism (not just "you need glasses" blind, more like "you cannot legally drive, ever" blind). Genetic testing also helps, but it's expensive.

Yeah. I have glasses but my vision isn't all that bad at all. Also, albinos have a particular facial structure. Can you explain that to me?

We don't, at least not that I'm aware of. That's why seeing an African American with albinism is so trippy because they'll have the facial features but white skin.

Where have you had the Best Bacon Cheeseburger?

This very very small café near my hometown, absolutely incredible.

Though chain wise, Five Guys hands down. Followed by Twisted Root.

Do you schedule your next AmA's?

Yes I do.

Isn't this your third one? What other questions could possibly be asked?

15th, actually. Really goes to show people aren't noticing them as often as you think they do.

Not many, but it is an opportunity for people who have never seen the AmAs before or didn't get a chance to ask to finally ask.